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    As October approaches, we will see a parade of pink ribbons, gathering momentum throughout the month. Lots of inspiring stories, donation campaigns, pink labels on the things you buy all the time.

    And lots of businesses will make lots of money, courting your business for “the cause” and donating “a percentage” to the breast cancer cause.

    I hate pink ribbons! I hate them and I wear them. When I was in chemotherapy they made me feel supported. Now I see them on cereal boxes, cat litter, you name it. Blech.

    When I was diagnosed in 2007, I was under the impression that breast cancer was a disease that had been mostly conquered. I had heard all about early detection, better treatments, etc. etc. etc.

    What? Stage III? Inflammatory Breast Cancer (survival rate: 20-40%) Really?

    Do you know what really happens when a woman is diagnosed with breast cancer?

    Regardless of what stage her disease is, she has a one in three chance of it coming back as metastatic disease.

    Breast Cancer kills, folks. It kills 150,000 people this year.

    My friend Kathleen has posted about how the media, especially women’s magazines, support our complacency with erroneous drivel disguised as facts.

    Why is this pinkwashing going on?

    Well, all the folks who make money with your purchases would like us to believe we are winning the battle against breast cancer, so we can feel like we are doing something. If we feel that we can do something (because we are good citizens of course) easily by buying this or that pinkwashed product, then everybody from toilet paper manufacturers to water providers can cash in on increased sales from which a tiny percentage they make their token donation.

    The Pink Crusade has a very dark underbelly. Those of us who have been through the hell of what real breast cancer is steel ourselves for the sweetness and light of Breast Cancer Awareness Month that is a figment of the collective imagination.

    The battle looks very much as it has for decades.

    We’ve made strides. But we have won skirmishes, not the battle.

    Too many women and men still die. Too many are now living with metastatic disease, subjecting themselves to treatments that make them sick to get some more time. Who among us wants to leave before we are ready?

    What would you do if you were running out of time and you weren’t done yet? What drugs wouldn’t you try?

    If you were sick with chemotherapy or compromising your quality of life for more time, or losing the use of your arms, back, or brain to cancer that just keeps marching on, what the hell would you be saying about the Pink drive for dollars, and the commercialism of breast cancer?

    So what can we do?

    1. Research before you buy. Don’t just buy because there’s a pink ribbon on the box. Bookmark Think Before You Pink and take action.

    2. Join Army of Women. Be a part of the search for the CURE, not more mammograms or salaries for CEO’s of nonprofits. Those are important, but the cure is the most important. I am thankful for mammograms but my cancer did not show up on a mammogram, and I am not alone (that’s not what you heard, is it?). I will be ecstatic when I know my daughter can grow up without fear.

    3. Get behind Deadline 2020.

    4. Donate directly to legitimate breast cancer charities. Fund raise if you like, but make sure that you know exactly where the proceeds are going.

    I would like to rename Breast Cancer Awareness Month to Face Reality Month. Anybody with me?

    I just added another post on this topic at Everyday Health. Let’s take back October!

    Have you ever done a “cancer prevention” search?

    Just trying to keep up with the stuff that shows up in the mainstream media is overwhelming. I have forgotten more than I have retained, although I manage a few key points (going for a walk in a minute).

    I also think that I should not be the only one who has to keep track of it. One take-away that I got from the last conference I attended was that businesses need to be more accountable for the substances that go into our environment, before they are allowed to do it! This was my topic at Everyday Health this week.

    I am annoyed that my cancer prevention efforts have so much to do with preventing toxic junk from getting to me. Air and water filters should not be necessary, neither should spending extra money on groceries that are not toxic. There is so much information out there that I give up and just let it all run through my sieve brain and hope for the best.

    Now, for some exercise which I know will help me!

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    I feel very reassured after seeing the surgeon, and full of questions as well. I learned some very interesting things.

    He assured me that the types of discomforts I’ve had are quite normal for someone like me, just in the early years of menopause. He clarified that yes, my odds of developing a cancer in my other breast are somewhat higher than someone else’s, but he expressed confidence that such a thing would not sneak up on me. We are being super vigilant, and anything that appeared would be caught immediately. It is also more likely that if I developed a new cancer it would be hormone responsive. IBC is less likely to hit my right breast and more likely, if it were to recur, to show up metastatic.

    In his experience, IBC is a pathological development that occurs when there is an existing breast cancer that has not been discovered. Sometimes this is referred to as the primary neglected cancer. That doesn’t mean it shows up on a mammogram. Often it does not, because it develops in nests or sheets. That doesn’t mean they are not already there before the inflammatory component appears.

    The tough truth I live with is that I had been remiss on my mammograms. I was overdue. It is also true that there was a lump, which I had not felt but my boyfriend had. He had been feeling it for two months and hadn’t told me, because “I figured you knew about it”. He felt terrible about it when he told me. I was angry. Yet, in all fairness, why would I not know about my own breast? Yet, many women don’t. A large proportion of breast cancers are caught by boyfriends and husbands.

    My cancer was Invasive Ductal Carcinoma, the most common cell type of breast cancer. If it had been caught early, it is the most curable. I will never know if my Inflammatory Breast Cancer was the “sleeper” kind that hides until it erupts, or just a neglected cancer that could have been dealt with.

    What I came away with this morning was relief that I will not be having any more surgery, confident that anything that shows up in my beloved and appreciated right breast will be dealt with quickly, and even more determination to get the 40% of women who don’t get mammograms to do it.

    And yes, check out your own breasts! I’m doing that now, even though I have faith that my husband will tell me if he notices anything. After all, it is mine, and the responsibility is mine.

    And, a reminder from Gaga for Ta-ta’s from Susan Komen for the cure:

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    You may have noticed my new icon to the right, the link to Army of Women. This organization is the brainchild of Avon and Dr. Susan Love, and it’s purpose is to end breast cancer by learning how it starts in the first place.

    This is a question researchers have been asking, but finding people to participate has been the main obstacle. To find out the answers, researchers need no less than an army!

    If you have never had breast cancer, you are needed. If your mother, sister, grandmother, or any other close relatives have had breast cancer, you are needed. If you are fighting it you are needed. If you are a survivor, you are needed!

    We are all needed. Women, men (yes, men!) survivors and everyone else, the research that will answer the question will take an army.

    If you join the Army of Women, you will be invited to participate in research, but are in no way obligated. Being part of the Army of Women means that you stay up to date on what’s happening in the research world. You can be part of it at whatever level you want to be.

    I’ve joined the Army of Women. I’ve joined it without hesitation, for my sister, my friends, my mom, so many women and men that I love. Most of all I joined for my beautiful 11 year old daughter, Felicia. I am imagining a world where she can grow up free of the fear of breast cancer.

    For more information, click on the purple Army of Women link on the right. Please join us! You are needed!

    We interrupt our regular blog program today for a moment of grief, as your chronicler just read a story that was painful and sweet beyond bearing.  As I have been emerging from my cave of recovery and joining the world I see stories that break my heart, and I know how blessed I am to be alive.

    I just read through a blog by and about a 37 year old mother,  who died of Inflammatory Breast Cancer in July of 2008, 14 months after she was diagnosed.

    I am so sad that I never met her.  I am so sorry for the ache remaining in the hearts of her six children, who still open cards written for them in the months before she left them.

    She was breastfeeding her youngest child when her symptoms began.  She waited too long.

    Damn, damn, damn.  It hurts. She was one of too many on a list on the blog I was reading.  I read their stories.  They were all mommies.  They all left children behind.

    Survival is bittersweet sometimes.

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    I had visits with two women today who had to push for an accurate diagnosis.

    I drove into San Francisco to meet Valerie, who was diagnosed with IBC just a month before I was. Several doctors told her it was an abscess. She had numerous mammograms that showed nothing, and her breast was turning red and swollen before her eyes. She pushed until they knew what it was, and then she searched until she found someone who understood Inflammatory Breast Cancer. She told me that I was the first IBC survivor she had found who was diagnosed promptly and accurately. It was a full morning, and she gave me lots to think about. If you do a Google search on Valerie Fraser, you’ll see what a pioneer she is. She didn’t wait for someone else to give her the last word on her disease.

    As I become more and more connected into the cancer advocacy world it is becoming clear that far too many people are not getting diagnosed promptly, and the story I keep hearing is that people know something is wrong. They know, and their doctor tells them not to worry, to wait. I naively thought that this was most common with IBC, and that other cancers were diagnosed more quickly.

    After having breakfast with Valerie I headed back to San Mateo to teach my kids. Then it was to California Cancer Care to stand with my dear friend Anne for her second appointment with her oncologist. While I was waiting, I ran into another cancer traveler. I recognized her by her “fuzzy head” and we had a lively conversation. She had known something was wrong. She waited five months for a proper diagnosis! She wonders if her ovarian cancer would have been Stage 1 instead of Stage 2 if the doctors had taken her concerns seriously.

    I would love to think that this stuff doesn’t happen anymore, but it does.

    The problem is that none of us wants to believe we have cancer, so it can be the path of least resistance to not worry when deep down we know something is wrong.

    I really don’t know where I’m going with this rant. I’m expressing frustration. Can the “average Joe” know all about stuff the doctors are supposed to know? It is also true that doctors are human and can make mistakes, but I take issue with a doctor who decides what a problem is before eliminating every possibility.

    It still comes down to advocating for ourselves, knowing our bodies well, and taking charge of our medical care.

    And, scary as it is, squirmy as it makes people, I still tell every woman I meet.

    It’s been a long day.


    I once heard a story about a young girl with IBC. She was embarrassed to talk about the rash on her breast. She did not get diagnosed and she did not survive.
    Nasty opening sentence, right? Well, cancer is not nice, it’s not pretty, and while we don’t have the answers on what causes many cancers, we can and must do all we can to make sure they are detected, and as early as possible.

    One of the most important ways we can make this happen is to teach our children, and ourselves, to be on good, intimate terms with our precious bodies.

    One of my readers asked, is IBC hereditary? Many people want to know what puts people at risk, so they can either do something about the risks or reassure themselves that they are doing all the right things. The fact is that for many of us, a cancer diagnosis blindsides us out of nowhere. Very few of us are watching out for cancer. We don’t want to think it can happen to us.

    Being scared all the time is no answer either. What we can do is pay attention to our bodies the way we care for our children. If our child is cranky, we see what they need and give it to them. Is it sleep? Is it food? Is it a hug or a cuddle? Do they need to run off steam outside because they’ve been cooped up all day?

    Instead of seeing our bodies as that which produces (the work, meeting the deadline, the taxi service for offspring, etc) we can choose to enter into partnership with our bodies.

    I had that conversation with my daughter the other day. I told her how important it was for her to get to know her breasts. She’s growing into a young woman before my eyes. So many girls her age are wearing pink ribbon bracelets, and when I ask them what they mean, they say “breast cancer awareness”. When I ask them what that means to them they get squirmy and say, “I dunno!”

    Are we teaching our children to know their bodies, and be comfortable talking about them? Do our daughters and sons know they can come talk to us if they notice something not quite right about their “private parts”?

    What kind of example do we set for them? Do we eat good food, mindfully, enjoying each others company? Do we get enough exercise? Do we go to bed when we are tired?

    In the two months before I was diagnosed, I had pain and tingling in my left arm. I was a professional massage therapist, and smarty me, I figured I had been working too hard and was developing thoracic outlet syndrome. I began stretching like mad, but it wasn’t working. Instead of inquiring, taking the time, tuning in to my body as I knew how to do, I told myself to get back to my yoga. My hands got cold (they had always been characteristically hot..my clients said they were like heating pads) and I assumed that stress and lack of sleep was the culprit. My department had just downsized, and I had almost lost my job. I didn’t have time for a crisis.

    When it became clear what that little rash was, all of it made sense. It was a good thing I reacted to that tiny rash and did something about it. Many women don’t, they just figure it’s a rash and will go away.

    I am trying to teach my rebellious, on top of the world indestructible children to honor the needs of their bodies, and they do get tired of it. However, repetition is the mother of skill. They may think I am annoying (that’s my teenage son’s favorite word to describe me) but deep in their little noggins it will reside, and when something is wrong they will know.

    I had large breasts when I was a teenager. My name was on the bathroom wall. A boy two grades older than I was embarrassed me repeatedly. I wish I could have figured out that they were mine, they were beautiful, and that knowing them well and examining them once a month was appropriate and right, not shameful.

    After nursing two babies and letting their heads rest on my soft chest, I really missed my left one when it was gone.

    Let’s teach our children now, when it matters most.

     
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